Dr O'Reilly June 27 05

June 27, 2005
British of Columbia Ministry of Health Services
RE; Renee Dueck

Dear Sirs/Madams:
I am writing to request medical insurance coverage for Renee Dueck, a 21 -year-old Caucasian female from Manitoba who has recently been diagnosed with an M2 morphology acute myelogenous leukemia. This patient is a unique patient in that she was born with an autosomal form of severe combined immune deficiency and received an HLA haplotype disparate T cell depleted transplant from her mother after conditioning with busulfan and cyclophosphamide on July 26, 1984. This transplant resulted in durable engraftment of maternal lymphoid elements, both T cells and B Lymphocytes with full reconstitution of both T cell, mediated and antibody-mediated immunity.

She did not develop any graft vs. host disease. Thereafter, she enjoyed normal growth and development, without significant infections. The current state of myeloid chimerism at this time is not known. However, in all previous studies, the antigen responsive T and B cells in this child are maternal in origin. Her most recent assessment of T cell function dates to one month ago at which time she had a full complement of normally distributed T lymphocytes and normal responses to mitogens and antigens.

Over the last 2 weeks the patient developed a cellulitis of the legs as welt as multiple ecchymoses on the legs. At this time, she sought a medical evaluation at the Strongsville Division of the Cleveland Clinic, and was seen by Dr. Shawn He. She was noted to be severely neutropenic with a neutrophit count less than 500 mm with normal platelets. A marrow aspirate and biopsy performed by Dr. He demonstrated a marrow containing 32 % myeloid blasts, M2 type by morphology and by immunophenotype.

The patient will clearly need appropriate treatment for her acute myelogenous leukemia. The special circumstances of this child are such that accurate diagnosis of her disease is imperative. First, it is important that we ascertain the cell of origin of the leukemia. The patient was cytoreduced in 1984 with busulfan and cyclophosphamide. As a result there is the possibility of developing a late secondary

hematologic malignancy in her own cells. At this stage after the transplant, this would be rare since secondary leukemias, if they occur, usually develop within 15 years of the treatment. Nevertheless, this is the most likely possibility. In this case, it would be anticipated that the myeloid progenitor cells are derived from the patient. ALternatively, it is possible that the myeloid leukemia has evolved from the blood forming cells derived from the patient’s mother. The mother is healthy and hematologically normal. She is aLso HLA haplotype disparate from her daughter.

The implications in terms of treatment are quite important. If this AML has attributes of a chemotherapy associated secondary leukemia, it must be considered a high risk form of the disease. Such an AML would be appropriately treated with aggressive induction therapy with daunomycin and cytosirte arabinoside, possibly also including VP-16 and thioguanine since the DOCTER regimen has been associated with a particularly higher likelihood of sustained remission. An alternative regimen, potentially including only the daunomycin and ARA-C, could be considered for a primary AML. The treatment options for subsequent therapy also clinically depend upon these initial evaluations. If the patient has a secondary AML in her own hematopoietic cells, a transplant in first remission is clearly the treatment of choice. In this case the patient does not have an HLA matched sibling. However, the patient is durably engrafted with a lymphoid system that is entirely derived from her mother who is HLA A, B, DR disparate. For a transplant, we would propose to give a secondary graft after suitable cytoreduction from the mother who is the original donor.

A use of any other donor potentially matched to the patient entails a major risk of graft rejection by residual fully functional T cells derived from the haplotype disparate mother as well as the risk of a potentially lethal graft vs. host disease due to the fact that there are enough antigen presenting cells of maternal origin in this child to permit the stimulation of allo-reactive donor cells and subsequent generation of a lethal graft vs. host in the post transplant period. If the mother’s graft is used, a T cell depleted graft would be the only option. However, cytoreduction could be selected to maximize antileukemic effects, since the risk of the mother’s own T cells, already resident in the child, rejecting the grafts is minimal. Our studies here since 1980 have demonstrated no increase in the risk of leukemic relapse following a transplant for AML either in primary or secondary AMLs when a T cell depleted graft administered after myeloablative cytoreduction has been administered.

We would propose to have her come to Memorial Sloan-Kettering Cancer Center. Diagnostic marrows will be obtained. We will attempt to isolate, culture and identify the cell of origin of her AML. She will also have studies performed to determine her current state of chimerism, specifically to determine the origin of her T cells, B cells and normal progenitor cells. She could then be induced with a chemotherapeutic regimen. This could be started here at MSKCC and potentially maintained at home in Winnipeg.

I do feel, however, that if her disease warrants a transplant (at this point I expect that it will) that the transplant be performed at MSKCC because of our special expertise in transplants of HLA haplotype disparate T cell depleted marrow transplants, particularly for the treatment of severe combined immune deficiency and for leukemic disorders, The issues here are absolutely unique in the experience for severe combined immune deficiency. To my knowledge this is the first case of any leukemia occurring in SCID late after a transplant procedure. More importantly the unique chimeric state of this patient entails a significant number of difficult choices in the selection of treatment, transplant, cytoreduction and the type of transplant administered.
I would be happy to discuss this case further with you at any time. I urge your approval for insurance coverage for this unique patient so that we can define her disease adequately so as to be able to plan a potentially curative approach for this unique and potentially high-risk form of AML

Thank you for your consideration.
Sincerely yours,
Richard J. O MD
Chairman, Department of Pediatrics
Chief, Bone Marrow Transplantation Program
Memorial Sloan-Kettering Cancer Center

Renee is feeling good

Date: Mon, 27 Jun 2005 08:12:03 -0500 [06/27/2005 08:12:03 AM CDT]
From: Raymond Dueck Subject: Renee's treatment
Thanks for praying.
Renee is feeling good. The swelling in her legs has pretty much dissappeared. We are not sure at this point what the next step is. Dr O'Reilly would like to see her in NYC. It would be nicer if the treatment could be done at home. We have not yet heard from the Winnipeg doctors. Can they do the necessary procedures there? Will they give a letter to MB Health to authorize coverage at NYC?
We are sitting here waiting for answers.
Renee appreciates your phone calls at 216-444-1303
--
Raymond Dueck

from Cleveland Clinic

Date: Sun, 26 Jun 2005 16:06:07 -0500
From: Raymond Dueck
We were referred to you by Dr Bob Friesen and by Sharon Boychuk Our daughter, Renee, had SCIDS and received a bone marrow transplant in NYC at MSKCC under Dr Richard O'REILLY 21 years ago. This year she was on tour in the US and suffered several occasions of swelling/bruising on her legs. On Tuesday she dropped in to a Cleveland Clinic. They did blood tests and bone marrow aspirations and determined that she has acute myelogenous leukemia. She was admitted to hospital on Friday. Her doctor here is Brad Pohlman, M.D. a member of the transplant team
Cleveland Clinic may be a good hospital but Winnipeg is home for us. What complicates the situation is her unmatched bone marrow transplant when she was a baby. Dr O'Reilly's team did a stem cell transplant using bone marrow from her mother. Dr O'Reilly feels that the safest place to treat her is at Memorial in NYC. We expect to fly to NYC with her on Monday.
If you and Dr O'Reilly could agree that the chemo therapy could be done in Winnipeg, then we would return with her as soon as Dr O'Reilly gives the go-ahead.
If you agree that MSKCC is the right place for her to get the best treatment, we will need a letter from you to Manitoba Health to that effect, so that they will pick up most of the tab for the treatment.
Dr O'Reilly can be contacted at O'Reilly, Richard J. Chairman, Department of Pediatrics; Chief, Pediatric Bone Marrow Transplant Service; Claire L. Tow Chair in Pediatric Oncology Research (212) 639-5957
Your time and effort is much appreciated.
On behalf of Renee
--
Raymond & Martha Dueck

This is the 1st email

From: Raymond Dueck
To: Undisclosed-Recipient:;
Sent: Friday, June 24, 2005 11:52 PM
Subject: Renee is in hospital
She was admitted today at Cleveland Clinic Foundation in Cleveland with acute leukemia our flight leaves at 7 a.m. Saturday morning we have no idea when we will be back please pray for her and God's hand of healing on her and wisdom for her doctors
Renee has been admitted to
http://www.clevelandclinic.org/
Her doctor is Anjali Advani, M.D.
http://www.clevelandclinic.org/cancer/physician/docs.asp?StaffID=4490
She is on intravenous antibiotics
The phone # at her bedside is 216-444-1303
Your prayers are much appreciated!
Raymond & Martha Dueck
2 Eagle Court
East St Paul MB R0E 0L2
204-661-5348
cell 204-782-2112
Martha's cell 204-771-7559
204-364-2454 fax
Raymond@Dueck.net
http://www.duecks.com/
Check out
http://www.thelifelight.com/
Quoting Ken and Carolee Neufeld
Dear Friends,
Please pray...
Today I was on a day trip with a friend, Ray Dueck, a business man and president of LifeLight Ministries. A call came on his cell phone that no dad wants to receive. His daughter Renee had just been diagnosed with acute leukemia. It was the doctor calling. Renee is 21 years old and is on a YWAM (Youth With A Mission) team. At this time the team was in CLEVELAND, on an itinerary in the US. We receive Renee's news letters and it is evident that she is passionate about serving Jesus.
Ray and Martha will be on a flight at 7am, Saturday, to be with their daughter and to arrange medical treatment in New York. Please take a moment to pray for Renee and her family. If the Lord places them on your heart, continue with us in prayer for them.
Ken
Living Free Ministries
732 McMillan Avenue
Winnipeg, Manitoba
R3M 0V2
(204) 284-1973
neufelds@mts.net

Thanks for praying

Hi Renee,
It was so nice again to have a chat with you last nite. This morning my dizziness was gone. I took Alayna to her appointment, actually she drove and then I went to where Dr.Todd Sellick's office is, and waited for Justin. He had been late for his appointment, so they went a bit over 12. We went to Cherry Creek Cafe at Portage Place for lunch and waited for Alayna, but she forgot that she was supposed to come there, but eventually she did.

Justin was quite out of it. He couldn't remember anything. He wanted me to take him shopping to Value Village, etc. but I couldn't take him in that state and Alayna could not stand it. Todd had suggested yesterday when we met with him that it would not be necessary for us to give him any more financial support. He of course was not very happy about that. It is so sad. I had a good cry about that yesterday, but today I feel better. Those lessons from the Bible study have helped me so much. I called Telus and they said the long distance charges always get put on the next month's statement. Does that make sense?

Thanks for praying. Love, Mom

Pictures of Renee from The Wave

Renee starts at YWAM

Renee Dueck
c/o YWAM
2859 Commercial Dr.
Vancouver, BC V5N 4C7
Home Phone (604) 255-3154
YWAM Vancouver (604) 255-5262
Chocolate_thebreakfastofchampions@hotmail.com

August 26, 2003
Dear Friends

I hope this letter finds you doing well and enjoying the last days of summer. At this time last year, as you may remember, I was preparing to leave for a Discipleship Training School run by Youth With a Mission Vancouver.

I spent three months of the school in Vancouver, learning about a wide variety of topics such as How to Study the Bible and World Missions. Then we went on a two-month outreach to South East Asia, visiting a total of four different countries. In Singapore we worked alongside local churches promoting missions and doing street evangelism. We ministered to drug addicts and homeless people at drop-in centers in Malaysia. In Thailand and Cambodia we spent much of our time praying for those countries and had opportunity to be involved in all kinds of ministries, from working with prostitutes and street kids, to sorting clothes to be sent to poor villages in northern Thailand.

Overall, it was a very rewarding experience, and during this time I felt God calling me to more involvement in missions. So in June I went back to Vancouver to staff the summer Mission Adventures program. This program is designed to get youth groups involved with missions. During the summer we run four ten-day programs, each of which consists of four days of training and six days of outreach, mainly to different drop-in centers and soup kitchens in Vancouver. My duties consisted of directing the passion play our staff performed during every training week, supervising clean-ups, preparing meals, and hospitality. This summer we had very few teams, so we were able to spend some time on Vancouver Island helping out with Vacation Bible School at a church there, as well as spend a lot of time at drop-in centers ourselves.

This fall I will be staying on as full-time staff with YWAM Vancouver and have committed to working with them for at least two years. My main focus in being there will be in drama ministry, working with DTS students to prepare dramas they can use on outreach, and with mobile teams to give presentations to churches and schools in the Vancouver area. I also hope to have plenty of time to be involved in local outreaches at some of the drop-in centers I worked with this summer and am looking into the possibility of a free drama club an outreach to kids in our neighborhood. God has really given me a heart for the city of Vancouver and I feel confident that I am where he wants me. I am so excited to see what the next two years will bring.

The only aspect of working with YWAM that I dislike is asking for money, but it is necessary as no one in YWAM is paid a salary, from the president on down. I will be raising support to pay for all my housing, food and general living expenses and I would ask you to consider being one of my supporters. Please do not in any way feel pressured or obligated. All I’m asking is that you pray and ask God if you should give and in what capacity. You can give a one-time donation or donate on a monthly basis. If you would like up-dates on how I’m doing so you can pray for me, please let me know. My contact information is at the top of this letter. All cheques should be sent to:

YWAM Donor Services
Box 21505 Little Italy PO
Vancouver, BC
V5N 5T5

*Please make all cheques payable to Youth With a Mission. Donor Services cannot process any cheques with anyone’s name anywhere on the cheque, even in the memo line, so please leave the memo line blank and include a note of designation. You will receive a tax-deductible receipt for your donation.

Thank you so much for taking the time to read this letter. I am so grateful for all your prayers and support. Thank you for taking an interest in my ministry. Please take a few minutes to fill out the response form at the bottom of this page and send it back to me. Once again, thank you and may God bless you abundantly this fall.

With Love,

Renee getting ready to go to YWAM

Renee Dueck c/o Raymond & Martha Dueck
#2 Eagle Court East St Paul, MB, R2E 0L2 CANADA
Renee Dueck c/o Youth With A Mission Vancouver
Box 21507, Little Italy PO Vancouver, BC V5N 5T5 Phone: (604) 255-5262

Aug 14, 2002

Dear Friends and Family,

I graduated from Riverton Collegiate Institute in June. Many people asked me at different times throughout the year if I knew what I wanted to do next year and for most of the year, the only answer I could give was “absolutely no idea”. I really wanted to be involved in a short-term missions program, but with so many organizations to chose from, and so much need in the world, it was hard to know exactly where God wanted me.

One of my favorite verses this year has been Jeremiah 29:11—“ ‘For I know the plans I have for you,’ declares the Lord, ‘plans to prosper you and not to harm you, plans to give you hope and a future.’ ” I had this verse taped inside my locker door as a constant reminder to me that God has a special plan for me; that I shouldn’t run ahead of Him and try to do my own thing, but that I should wait patiently for His leading.

In May, I sent away my application to Youth With a Mission (YWAM) to attend a Discipleship Training School (DTS) in Vancouver. At the end of June I received a phone call from the registrar letting me know I was accepted. For those of you not familiar with YWAM or the DTS program, it consists of a 12-week lecture phase, which takes place in Vancouver, and an 8-week outreach phase. There will be outreach teams going to Morocco, Mexico City, and Central Asia.

During the lecture phase I will be living in dorm at the YWAM base in Vancouver. The days will consist of lectures, small group discussions, intercessory prayer groups, worship, and work duties. There will also be opportunities for outreach during the lecture phase. As for the outreach phase, I am not entirely sure what it will involve, as I am not sure which country I will be going to. However, in whatever country I go to, we will be involved in cross-cultural evangelism as well as service opportunities.

I would like to ask you to pray for me as I prepare to leave for Vancouver this fall. It will be a big adjustment for me to be so far away from my family and all my friends. Also pray for me that I will be able to discern God’s will as to which outreach team I should join. And of course, there is also a financial cost involved. The DTS costs anywhere from $6000-$7000 CDN depending on the location of the outreach. I spent three weeks this summer working at Beaver Creek Bible Camp , so I was not be able to earn very much of the needed amount. I would appreciate whatever financial support you are able to give. And I will definitely need your support through prayer.

I am in great anticipation of next year, and look forward to seeing how God will work in me and through me. Thank you to everyone who has encouraged and supported me in this decision. May God bless you in the year to come.

Sincerely,

Renee